Health Related Quality of Life

Patients' health-related quality of life (HRQOL) varies depending on the stage of CKD, the need for dialysis, and whether or not patients are transplant recipients. In many studies, these groups are compared with each other, leading to variable findings. Much of the early HRQOL research was done using generic questionnaires. Goldstein et al. (2008), however, developed the Pediatric Quality of Life Inventory 3.0 ESRD Module to assess changes in HRQOL that are specific to CKD.

Ruth et al. (2004) used the Netherlands Organization for Applied Scientific Research Academic Medical Center Child Quality of Life Questionnaire, the Child Behavior Checklist, and the Teacher Report Form to assess the relationship between HRQOL and psychosocial adjustment in a study of 45 Swiss children and adolescents with steroid-sensitive nephrotic syndrome. In this study, the patients had satisfactory HRQOL scores except in social functioning, suggesting difficulties in peer and family interactions. However, parents' HRQOL perceptions were more negative than their children's perceptions and included impairments in motor, cognitive, and emotional domains of functioning. Medical severity correlated with poorer HRQOL. This study was unique in that it examined mothers' psychological distress, which was shown to negatively affect their children's HRQOL and behavior.

Studies comparing different populations of children with CKD using measures of HRQOL have resulted in conflicting findings. Gerson et al. (2005), McKenna et al. (2006), and Reynolds et al. (1991) all completed studies comparing the following four groups: CKD patients, ESRD with dialysis patients, posttransplant patients, and healthy controls. In all three studies, children with CKD reported lower HRQOL compared with control subjects.

Gerson et al. (2005) suggested that activity limitations in patients with CKD had more significant impact on HRQOL than did either physical or emotional discomfort. Compared with healthy controls, adolescents with CKD reported higher scores on the items that assessed resilience in the domain of home safety and health. On the self-report of items that assessed risks, CKD subjects endorsed greater avoidance of personal risky behaviors, such as smoking and drinking; a lower likelihood of having friends who engaged in risky behaviors; and a lower tendency to engage in disruptive social behaviors.

Using a generic HRQOL questionnaire completed by parents, Gerson et al. (2004) examined the association between anemia and HRQOL in 105 adolescents with CKD. Patients (n = 70) with hematocrit values of 36 or less reported that they were less likely to participate in school activities and were less physically active than subjects with higher hematocrit values. Pattaragarn et al. (2004) examined exercise capacity in children receiving peritoneal dialysis or hemodialysis and in healthy children. Although results showed exercise capacity was consistently poorer in the dialysis patients, exercise capacity was not related to hemoglobin values.

Childhood-onset CKD has been shown to be related to poor adult outcomes. Adults with CKD reported that they experienced a delay or failure in achieving appropriate milestones in the areas of autonomy and psychosexual and social development; this appears to be especially true for adults with ESRD (Stam et al. 2006). Icard et al. (2008) reported that adults with childhood-onset CKD were more likely to have difficulty with psychosocial adjustment, educational achievement, and employment.

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